Author Topic: Consults Are Completed  (Read 2661 times)

Muffin

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Consults Are Completed
« on: October 20, 2017, 12:38:27 pm »
Hi!  I am fairly new here and now have something to ask, say, feel, etc.  I do not have a signature, but will get one if it is helpful.  Will try to fill you in. On 9/20/17 I had an MRI done. Findings were 6x5x3 mm mass consistent with VS in right IAC. This week I had two consults with neuro teams at U of M Health and Mayo in Rochester. I left deflated that this isn't something that can be "fixed." That brain surgery will make things worse or the same. It is on the lower balance nerve by cochlea, which is trickier than if it were on top one. Chances of saving my hearing with middle fossa is 50-50. Sometimes they cannot get it all with this approach if it is on the bottom. Top has better odds.  So I chose W and W. I cried only a little, and I am sure it was because of all the prayer warriors in my corner and God's grace.  After about an hour of it all soaking in, I felt better. One thing the surgeon in Mayo said was, "You don't have to do anything now. Watching and waiting is certainly a good option. This tumor is small and sometimes they stop growing."  I have been doing a baby aspirin a day for a couple weeks because it sounded good.  I eat well, exercise already, take care of myself.  So now I am wondering about going to a naturopathic person.  The surgeon said in years past they would usually always operate on them but have learned that sometimes they quit growing.  I keep repeating that because I like the sound of it.  I have balance issues and my hearing is off but still considered normal. We laugh that even with the tumor, Imstillmhear better than my husband.  What else is there besides aspirin we can try?  How many on here have had tumor stoppage with W and W and/or shrinkage?  Did you eat anything special?  I can not help think that there is something out there in the wild that will shrink this little beast naturally.  I am rambling.....but isn't that what this is about?
6/10/17: Sudden Hearing Loss
9/20/17:  MRI Shows VS in R IAC Measuring 6x5x3 mm
10/18/17:  On Watch and Wait Status
10/11/19:  MRI Shows VS Now Measuring
6/17/21:  7x12x6 mm
7/15/21:  Removal of tumor by Friedman and Schwartz at UCSD
9x6x5 mm

daoisthere

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Re: Consults Are Completed
« Reply #1 on: October 20, 2017, 01:51:14 pm »
Hi Muffin,

I am fairly new to this group as well.  Yes, a signature will help some of the hero members guide you through the various options.  They have really aided me into finding the best option that I could deal with at this time.

Grace is a good thing.  I think of Galatians 5:22 - The fruit of the spirit.  Since 22 is the number of the gene where the defect can be the culprit of the overgrowth of the schwann cells.   

Yoga is helping me maintain balance.  Perhaps there is a group in your area.  I like to close my eyes with the standing postures to help me with identifying some of my balance deficiencies.

Be encouraged... You are not alone.   And your contributions are also important. 

Peace,
Daoisthere
08/21/2017 MRI reveals AN
10.8 x 3.6 x 4.2 mm Completely fills Right Canal
10/09/2017 Watch and Wait
01/19/2018 2nd MRI  Tesla 3 12 x 5 x 4 mm
New Diagnosis - Partial Empty Sella

Muffin

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Re: Consults Are Completed
« Reply #2 on: October 20, 2017, 04:09:21 pm »
Thank you, Daoisthere.  I see you love music, too. Me, too. I am in a group that plays for those in a nursing home. I would be sad without music in my life. Already, certain sounds are distorted.  Hearing my grandchildren. I transcribe on the side.  We need our hearing. Let's continue to pray God will destroy those rogue cells.  We will be like the bothersome widow and the judge, who finally granted her request.

I must learn how to do signature......
6/10/17: Sudden Hearing Loss
9/20/17:  MRI Shows VS in R IAC Measuring 6x5x3 mm
10/18/17:  On Watch and Wait Status
10/11/19:  MRI Shows VS Now Measuring
6/17/21:  7x12x6 mm
7/15/21:  Removal of tumor by Friedman and Schwartz at UCSD
9x6x5 mm

daoisthere

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  • Composer and Guitarist
Re: Consults Are Completed
« Reply #3 on: October 20, 2017, 04:19:39 pm »
Hi Muffin,

Keep up the singing. 

Under the menu 'Profile' select 'Forum Profile'.  This is where you will find the place to put your signature.  I also decided to Watch and Wait. I just can't give up the music quite yet.  I have 2 grand children and am expecting a third in March. 

Peace,
Daoisthere
08/21/2017 MRI reveals AN
10.8 x 3.6 x 4.2 mm Completely fills Right Canal
10/09/2017 Watch and Wait
01/19/2018 2nd MRI  Tesla 3 12 x 5 x 4 mm
New Diagnosis - Partial Empty Sella

ANSydney

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Re: Consults Are Completed
« Reply #4 on: October 21, 2017, 03:10:05 am »
One thing the surgeon in Mayo said was, "You don't have to do anything now. Watching and waiting is certainly a good option. This tumor is small and sometimes they stop growing." 
Actually two-thirds stop growing. So "sometimes" should be "most of the time" With time, they all stop growing, and growth after the fourth year from diagnosis is "very rare". In some European countries, tumors less than 2 cm in diameter are observed in 95% of cases. The US is very different, but slowly changing.